Not the VR You're Thinking Of

Author’s Note:

I know this doesn’t quite fit the theme for this week’s stories, but I feel like this needs to get out there, and I’m not on FB or Insta so this is basically the only way I can tell the story. This is 100% a TRUE STORY. In fact it is MY STORY.  That's right, this is NONFICTION.

I live in Maine, I’m on disability, and the state’s vocational rehabilitation (VR) division was working with me last year hoping to find me a way to go back to work. They failed miserably, but that’s only because this is Maine and nobody here pays more than minimum wage. And then Medicare changed some rules and it’s now impossible for me to earn income ever again. So for six months I’ve been coming to terms with the fact that I just need to be permanently retired at 43 years old. It sucks and I hate it. But it is what it is. Then yesterday I got an email from the VR division, they’ve shifted some personnel around and I now have a new case officer who wanted to introduce himself and setup a time to meet with me. This is, word for word, my response to him. I want to be clear I’m not mad at the Maine VR folks. I’m mad at big pharma, I’m mad at Medicare, I’m mad at private health insurance, I’m mad at my doctors and pharmacists, and I’m mad at Congress for allowing situations like this to be a regular thing in this country. And honestly I’m mad at myself for being so “fragile” that I need to stop working, to give up on ever having a legacy or contributing anything to society. And due to the symptoms that come with my disease, my chances of ever having a romantic relationship have dropped to 10%... and now that I can’t earn any income – as a MAN in America – they’ve dropped to practically zero since I can’t “provide for my woman and our family” anymore. So yeah, I’m quite bitter about this situation. But I feel like that’s the proper response to it. That said, don’t panic I’m otherwise doing okay. I’m frustrated and slightly depressed, but I’m not thinking about doing anything stupid. I don’t do drugs, don’t even drink alcohol. I’m “mostly okay” but I’m also very sick and I wish there was a way that I could at least continue to build a career even though I have this stupid disease. So, without further ado, here’s my reply to my new Maine VR officer, let’s change the names to protect the innocent and call him “George.”

Hello George.

Thanks for getting in touch. I had signed up for VR last year when I was still hoping to find work. But my situation has changed, and I told my previous rep what was up when it happened. So let me give you the run down, and then if you still want to schedule a meeting after reading this, then we can certainly do that.

Since around 2009 I've been dealing with a medical condition. It took several years, and more than a dozen different doctors misdiagnosing it, before I finally got a proper diagnosis in 2017, just as the symptoms started to get bad enough to affect my work. It is an autoimmune disease called "hidradenitis suppurativa." Basically my immune system is super badass, and it's been attacking my own body. Between 2017 and 2018 we tried three surgeries to excise the affected tissue, but it didn't work. It only made it worse. The surgical incisions never healed, instead they became additional sites for the disease to attack. To this day, the skin of my upper body basically looks like swiss cheese wrapped thinly around raw meat. It's pretty gross.

Also in 2017, my doctor prescribed "humira (adalimumab)" which at the time was the only approved treatment for this disease AND five other autoimmune conditions. At the time, the stuff had a retail price of $7800 per month. On health insurance offered through my employer, their "prior authorization" bullshit committed FRAUD and ran me in circles for several years rather than approve the prescription, but by law they aren't allowed to issue an outright denial of service. Because it's super expensive and they don't want to pay for it, I went untreated for FIVE YEARS. Lost TWO JOBS because of it, as the disease progressed. Went on full disability in Jan 2021, but had to wait two more years for Medicare eligibility to kick in in July 2023 before I finally was able to get consistent access to the medication. Lost another job when their business lost 80% of their customers due to their inability to do proper marketing and advertising, when that job was supposed to be the one that got me off of disability and back into the workforce but I’d only been there for a few months. Losing that job = couldn't pay rent, lost my home in NJ in December 2023. Had no savings and nowhere else to go, so I was forced to move in with my dad here in Patten, ME in January 2024.  

Thankfully, my dad isn't making me pay rent because my SSDI only pays $1500/month in 2025, last year it was even less. But trying to find a job again showed me one thing VERY clearly: Patten has zero economy because practically nobody lives this far north. The nearest "jobs" are 110 miles away in Bangor, and there aren't very many of those either. So if I was to get a job again I'd have to move closer to where the jobs are, which means paying rent again. Paying rent will add $2200/month to my expenses. And that's not even including other bills like electric, internet, heat, water, and sewer. So I'm basically stuck in Patten because I can't afford to go anywhere else. Rent > SSDI income. 

All through 2024, because I had a job for part of 2023 I was put on the "big pharma" manufacturer's patient assistance program, so I got the medication for free based on my low income... because my 2023 tax return said I earned too much for the "Medicare Extra Help" program but was still below the manufacturer's program limits. I was looking for a job that would let me stay on that program.

But as of Jan 1 2025 they changed the eligibility rules. And the copay scales for Medicare, too. Currently on Maine's QMB program, my copay for this ONE MEDICATION that is keeping me alive, is $12.50/month. The retail price this year is $38,700/month!!! If I earn income > $22,000/year, then I lose the QMB program coverage and my copay will go up to $6300/month - just for this ONE medication. And I have three others that would also increase drastically in copays, too. Making that change, along with the need to pay rent again, would increase my monthly expenses by around $10,000 - before taking taxes, gas money to drive to work, or utility bills into account.

Which means I have three choices: 

1. Find a job that pays $340k (before taxes) so I can afford the copay for my medication, rent, and utility bills again. 

2. Retire permanently on disability, try to live on the $1500/month SSDI + $23/month SNAP that I'm getting and never earn any other income again so that I stay on the Medicare/QMB low copay system. 

3. Find a job that pays less than $340k, can't afford the copay for the Humira medicine, then in three months the symptoms are so bad that I have to quit my job and go back on disability. By the time they file the paperwork to get me back on the program, the disease will kill me.

There are NO jobs that will pay me $340k, even with a master's degree and 25 years of work experience under my belt. And I would much prefer not to die just yet. So I chose option 2.

This whole situation came about because big pharma (specifically in this case the Abbvie company) is super greedy. NOBODY in the entire healthcare system - not doctors, not insurance, not pharmacists - will ever negotiate prices with them. And I've TRIED but I don't have the pull to force them to change, every time they just say "Well, we need that money to fund studies of NEW drugs" - no they don't, they get billions in government grants for that every year. They're just greedy assholes. And their retail price of $38,700 PER MONTH FOR LIFE, which increases by 20% every six months, is an insult to patients in need. This medication covers SIX very serious diseases. NOBODY in America can afford that price. The ONLY way to get the drug is to be on Medicare with the "extra help" program, meaning have income < $22k/year. So their ONLY customer is the federal government. They set prices that high because NOBODY negotiates with them, they know they can get away with it, and they know the Medicare system will just rubber-stamp approvals for all the prescriptions at full price.  The real slap in the face is that in July 2023 the original patent for Humira finally reached the age where generic/biosimilar products are allowed to be sold. So there are half a dozen generic equivalents now… but they are all the same goddamned price.

So essentially, what's happening is the US government is paying "big pharma" (via Medicare) to keep me and others like me out of the workforce and completely reliant on Medicare, Social Security, and the whims of the pharma manufacturers for our survival. They have taken away my/our ability to EARN A LIVING under our own power, even in cases like mine where as long as we take the medicine regularly we physically can still do some type of work. Because as soon as we try to go back to work, they withhold the medication and we will die without it.

So in a nutshell, because of how big pharma is raping the US Government and the American people, and how insurance rules prevent ANYONE from negotiating those prices... I had to retire 25 years too early and sit here on full permanent disability until I'm old enough for it to convert into regular social security retirement benefits.

For reference, I found out that Humira has a manufacturing cost of under $100 for a month's supply per patient.  

Yet their full retail price is currently at $38,700 per month, and it increases roughly 20% every six months. With a regular Medicare copay of $6300 to patients who earn more than $22k/year, which is expected to increase anytime the full price does.

$100 manufacturing cost, $38700 retail price – paid in full by the Medicare program every month, for EACH patient, and it’s used for half a dozen common immune disorders so there are THOUSANDS if not MILLIONS of patients who use this stuff. That is one hell of a “kickback” from the US government to big pharma, wouldn’t you agree?

So if you have an idea of how we can break the cycle and give me back my freedom to work while still getting the medication that keeps me alive at an AFFORDABLE PRICE, along with reducing the cost of rent so I can move into a place that has more job opportunities for a professional scientist.... then yeah I'd love to chat with you about some options. But as things currently stand, I need that medicine to keep me alive, and if I go back to work then I can't get the medicine anymore. So I can't go back to work like this, which means there’s probably nothing that VR can do for me that I’m not already doing for myself. I’m in a “don’t piss on me and tell me it’s raining” kind of situation here.

Feel free to share this story with anyone you think will listen. Because the system is broken and I alone don't have the power to change it.